Doing the Hokey Pokey in Limbo-Land

It's a new year, a time when we absolve ourselves from the past and look forward with hope to new habits, new attitudes, and new adventures. I need to read this sentence 100 times a day until I believe it.

I ran across a website and community at http://www.butyoudontlooksick.com/ this week. This is an electronic magazine dedicated to the disabled and chronically ill containing a variety of articles and resources on raising quality of life. In one of these articles, I read that one of the hardest parts of having a chronic illness is that it's chronic. And for me, if it was the same thing every day, at least that would be predictable. Whatever it is that I've got is maddeningly, chronically unpredictable - that "same shit - different day" experience doesn't apply. But every day there's something, and as I dutifully log it for my doctor, it occurs to me that this illness, however irritating, is a constant in some way. While so much has changed in these last few years: friendships have fallen by the wayside, social invitations have ceased, and my fragile self-esteem is on life support, this illness (and my saintly husband and mother) has been my constant companion. Somebody hired a new dj for my Dancefloor of Life, and I find myself surrounded by dance partners that I didn't count on.

There's a great book out there titled The Hokey Pokey IS What It's All About written by a woman who suddenly develops a rare blood disorder and watches helplessly as her husband and best friend begins his journey into Alzheimer's disease. She describes her life changes and frustration and fear, and then suddenly a surrender. Surrender didn't mean quitting for her. It meant the end of trying to control her life circumstances. She developed a new attitude, one that changed the music on her dancefloor to the Hokey Pokey, and she began to dance with the difficult partners that showed up on her dance card. When a bill arrived that she couldn't pay, she learned to say, "Oh look! It's the Hokey Pokey!" and just keep dancing. When her husband suddenly acted like a person she'd never met, "Hokey Pokey time!" When the house and the yard began to show neglect, she just turned up the music. 

It's so easy to be overwhelmed by the bills we can't pay, the isolation, the guilt (oy, that's a whole different article), and the body that seems to have betrayed me. The dreaded question, "Do they know what's wrong yet?" makes me want to wear a button that says, "No, but good people are working on it." Then I can just circumvent the whole conversation. But if I did that, I run the risk of having no conversation at all. I can't decide which is worse.

When I was a teenager, I was the girl that danced in front of the band. I didn't need a dance partner other than the music. I could dance every dance and was one of the last to leave. My favorite college activity - dancing. One of my must-haves in a prospective husband was that he must love to dance. When the girls were young, we turned up the music and danced through our chores. In later years, I knew when and where my favorite local band (Limbs Akimbo!) was playing, and I danced as long as they would play. The girls and I took tap dancing and jazz dancing classes together, and I had a few really good girlfriends during that time. It was a huge self-esteem boost to say, "I'm a dancer." I had great legs too.

So out here in Limbo-Land, where I don't know what's wrong with me yet, it's time to do the Hokey Pokey. It's not that I don't care about my bills or my house or the people I called friends. It's just that I can't control any of that. My days are what they are, chronically unpredicatable. There are a few things I am sure of: the love of my husband, children, and parents, the sun will rise and set tomorrow, and I'm not ready to stop dancing.